Living with Hidradenitis Suppurativa

I have been umming and ahhing over whether to write this post for some time now.  Do I really want people to know about such a horrible condition I have?  Most of the time it makes me feel dirty and smelly, when I am not!  I came to the conclusion that most people that know me know about it anyway and for those that don’t it will explain why I don’t often wear vest tops, etc. in the summer and, if I do, why my armpits look such a mess!  If I can help someone else who is suffering and maybe doesn’t know what it is then that would be great.

So what is Hidradentis Suppurativa (HS)?  It is a painful, long-term skin condition that produces abscesses and consequently scarring to the skin, usually of the armpits, groin, buttocks and breasts, basically anywhere you can think of that is going to be (a) painful, (b) unsightly and (c) cause the most aggravation!  Lumps can also form elsewhere, I have a recurring one on my neck which, thankfully has not come back for a while.  Some poor people have them on their face and I am praying this never happens to me.  At least on your body you can hide them with clothes, no matter how painful, I cannot imagine having pus leaking lumps on your face.

At the moment there is no known cause for HS but it has been linked to inflamed sweat glands and blocked hair follicles.  It is estimated that around 1% of the population suffers, however, this could be more as it is quite an embarrassing condition to seek treatment for and therefore some people may not bother.  It has been featured on Embarrassing Bodies on a couple of occasions.

HS ranges from mild to severe.  At the moment, I am lucky and would say mine is more mild, however, from time to time it does flare up very badly and is incredibly painful.  I can’t remember the last time I was completely symptom free!

The symptoms include red lumps, blackheads, cysts, scarring and channels in the skin which leak pus.  Sometimes these lumps can become infected which cause an infection requiring treatment with antibiotics.

There are 3 distinct stages to the disease and, unfortunately, at present, no cure.  These stages are as follows:

  • Stage 1 – single or a few isolated abscesses without scarring or sinus tracts.
  • Stage 2 – recurrent abscesses in more than one area and the beginning of the formation of sinus tracts.
  • Stage 3 – widespread abscesses with many interconnected sinus tracts under the skin. There may be severe scarring and continuous leaking.

HS usually starts around the age of puberty, but it can appear at any age.  It is less common for HS to occur before puberty or after the menopause, leading some experts to believe that hormones have some sort of influence on the disease.  I am absolutely convinced my HS is hormone related.  I only vaguely remember having light symptoms before I became pregnant with Little Mr A.  Whilst I was pregnant all of the symptoms disappeared.  As soon as I had had Little Mr A the symptoms came back worse than ever. I did seek medical assistance at this point but the only thing they would offer me were really strong antibiotics and I wasn’t allowed to get pregnant whilst on them or for 6 months to a year after finishing them as it could seriously affect a baby.  At the time we were considering another child and therefore I put up with the symptoms.  When I became pregnant with Little Miss A, again, my symptoms all but disappeared.  Since giving birth this time, I have gone back on the pill and my symptoms do not seem to have come back so bad, however, around ‘that time of the month’ they do worsen.  The Doctors never seemed convinced it was hormone related, however, I think all the evidence in my case strongly suggests hormones are to blame.

HS can run in the family and I really hope I have not passed this horrible disease onto either of my children I really do not want them to have to suffer with it.

It is said that smoking and being overweight can make HS worse so it is recommended that you lose weight and stop smoking to see if there is any improvement.  I cannot say for definite that giving up smoking has helped mine, but, I have not started again since having Little Miss A and, as I said before, my symptoms are not too bad at the moment.

In the early stages, the disease may be controlled with medication, however, I was constantly on and off antibiotics in the early days and, whenever my course finished, the symptoms would return!  Persistent and severe cases may require surgery.  I was offered steroid injections into affected areas, however, I could not face having injections into my armpits, particularly when they were already painful from the lumps!

I have learnt to live with HS over the years.  Yes it’s still painful and embarrassing and, no matter how hard I try, sometimes it does really get me down and I think ‘why me’?  It is especially frustrating in the summer when I want to wear strappy tops.  Somedays I cannot shave my armpits it is so painful and I just don’t feel comfortable having that on show!  Even at home, if I wear a strappy top, Little Mr A now notices and will not come for a cuddle unless I put another top on to cover it up.  That really hurts.

Whenever symptoms are really bad and I am feeling upset I do try and pull myself out of it. It is not a life threatening illness it is just frustrating and painful and I know things could be a lot worse.

For more information please visit the NHS website.  For support there are various help groups and websites such as The Hidradenitis Suppurativa Trust and even a Facebook group.

I am not brave enough to put any pictures of my horrible skin on here, but, if you want to see what it looks like there are plenty of images if you search on Google!


11 thoughts on “Living with Hidradenitis Suppurativa

  1. It must have taken such a lot of guts to go ahead and press ‘post’, but I really doubt you’ll find anyone who doesn’t feel anything other than supportive. It must be awful to be in pain, and the thought of having injections into your armpits at any time, let alone when they’re sore, makes my toes curl!
    Fingers crossed that yours stays in the background, and I hope it’s right that once you reach menopause your condition eases and goes away. Until then I suppose you’ll just have to keep having more children 😉

  2. Ive had hs since I was 11 and im a stage 3-er.
    Ive tried every antibiotic and antibiotic combo under the sun and had about 15 operations. Im 24 now and struggling to understand how im supposed to habe a life. Im a non smoker but I am overweight, although I am constantly trying to lose weight. Only problem is that I permenantly have abcesses, so any movement is extremely painful. They control mine by pumping me full of codeine and tramadol and they make me dizzy and sick. I worry about what life is going to be like in the future, like how am I ever going to find someone looking like I do? How am I supposed to get a career and keep it when I have to have so much time off? This disease is life threatening. And life ruining. I just dont see how things are ever going to get better.

    • You sound like you are really suffering. I understand your concerns about finding someone, I am lucky to have an understanding husband, he has seen some really horrible things that you really don’t want your partner to see! I’m sure you will find someone who will understand. I hope things get better for you and you are getting the support you need. Thanks so much for sharing. It is nice to know we are not alone in this x

  3. Hi there. I’ve just read you blog and as the husband of a lady with HS I can sympathise with what you go through. My wife has had HS since her teenage years but only in the last 6-7 years has it been really bad. We too believed that it must be hormone related and last year this was confirmed to us by a specialist we saw. In my wife’s case the onset of her HS being really bad could be traced to having a coil fitted. The advice we have subsequently received is that pregnancy or menopause would cure the condition. In the meantime though she has had surgery to remove the infected areas, under both arms and her groin. Despite reading lots of scare stories about surgery for HS the outcome has been brilliant. She is no longer in constant discomfort and pain and she no longer needs to wear dressings to cover the affected areas. In fact only last week she went swimming for the first time in 7 years.

    I wish you all the best with your HS and hope that you can find a treatment that helps you. I know how debilitating and soul destroying it can be. Good luck for the future…

    • I’m glad surgery has helped your wife it is nice to hear of some success! She is lucky to have such an understanding husband, it is not the nicest thing to have to share with your partner! Hope your wife continues to improve, thanks for sharing x

  4. Having suffered through this for years I commend you for being able to press the post button. This disease is so hard to live with and even that much harder to talk about. I thank you for showing that courage and wish you all the best! I am in stage 3 and have not been off medication for 5 years now. I just had laser marsupilization surgery to help. I pray everyday for a cure. Best of luck!

    • It was very hard to share but the response I have had has been so positive I’m glad I did! It is great to know we are not alone in this horrible disease and, like you, I really pray that one day they can find a cure to stop others having to go through it. Thanks for commenting x

  5. Wow – thanks for writing and posting this. Until yesterday I’d never known about this even though I’ve been getting the sores / lumps for about 14 years. Finally got them checked out yesterday, and they reckon it’s this, and stage 1. Just starting 2 weeks of max strength antibiotics. Wishing you all the best – I have it very mildly and it can be very painful; goodness knows what it must be like at Stage 2 or 3.

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